Challenges Involved in Getting Support
This study found that the views and priorities of services and carers sometimes conflict, and there are discrepancies between what services believe they provide and what carers experience. The biggest challenge identified by carers was in getting the support they wanted from services to ensure they were meaningfully involved in the care of their relative. Despite some positive experiences, many felt they were not listened to by clinical teams, and certainly did not feel they had been treated as partners in caring for their relative.
Carers in this study did not always feel respected or adequately informed, including about forensic mental health services and their rights as carers. The range of carer involvement is clearly highly variable and demonstrates that some forensic mental health services recognise the value of engaging with carers and are actively working to foster collaboration with carers and to meet their support needs, while others are not. Those forensic mental health services with low engagement could learn from their colleagues who have achieved high levels of carer engagement about how to overcome the barriers to, and increase, carer involvement.
According to services’ estimation, fewer than half of carers were involved in Care Programme Approach (CPA) review meetings. This is worthy of note given the consistently high value carers placed on being involved in their relatives’ care and shared decision making.
These findings suggest a need for forensic mental health services to reconsider the mechanisms in place for inviting relatives to formal reviews and meetings, and the extent to which they are supported to attend. This needs to include recognition of the difficulties for those carers who have additional responsibilities as named person. Carers described the challenges of this role, including that they were unclear about their remit and how this could work if they disagreed with their relative.
Carers also emphasised the difficulty of presenting their views in front of their relative, especially given their potentially fluctuating and unpredictable nature. Carers valued an opportunity to speak honestly to staff, and discussing views which may feel uncomfortable and distressing for their relative.
There have been innovative developments elsewhere, including user-led standards for CPA that place the patient at the centre of proceedings: this includes supporting the service user to write the various invitations, including for carers (McKeown et al, submitted). Various other initiatives on forensic care pathways make the case for more systematic involvement of carers, linking this with risk management, discharge planning and formal carer assessments (Kelly et al, 2002; Kennedy, 2002; Gill et al, 2010). The Triangle of Care is in use in English high secure settings to encourage carer recognition and involvement.
Carers identified being challenged by the travel distances to and from forensic mental health services, as well as by the nature of the institutional regimes and environments they visited. This is unsurprising considering the large catchment areas of secure units especially the high and medium secure units. The considerable travelling distances to and from secure services make it challenging for carers to maintain contact with their relative or friend, but also for them to attend support groups based at these services.
It is noteworthy that staff in services explained low uptake of carer support in terms of carers choosing not to engage, whilst carers identified numerous barriers including distance, information sharing, confidentiality, respect for the carer’s role, and so on. Ironically in this regard, Arksey and Glendinning (2007) remark on the actual limitations on choice for carers in general.
This implies a need to develop a variety of valued support opportunities that appeal to diverse needs (widening choice), paying attention to factors that impede carer uptake of support. Furthermore, if forensic mental health services improve the ways they meet the needs of carers, they should be better placed to meet the progressive policy rhetoric that underpins recovery goals for mental health services (Drennan and Aldred, 2012).